1. This is for PMR Pro who I believe lives in Northeastern Italy? The floods seem horrendous and I am wondering if you are all right.
2. I am in France and after a spell with heart palpitations that were different from my usual mitral valve plus scenario, I saw a cardio here who treated me and assured me I had not graduated to Afib. But in discussing my PMR and that I am still on Pred (now 1mg and testing slow countdown) , he said that when people get PMR or other autoimmune illnesses and take Prednisone, they are also given this ampoule of Vitamin D3 to take by mouth one time each month for 6 months to help with the autoimmune issues and the Pred effects.
I got the script filled but as I always do I am hesitating taking it. From what I have read it no longer has some bad weird ingredient that they removed, just some saccharine and a couple of other things. Bad reactions are very rare according to the pharmacist and what I have read, but still I wanted to know if anyone has ever heard of it or taken it? My Vitamin D is often a bit low or borderline at present but I think this is a whole other thing!!
AS always, I appreciate everyone's thoughts and please PMR Pro let us know that you are ok!!
Thank you all!!!
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bluegirl7
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1) I am in northeast Italy - the floods aren't! I know it says northern Italy - we call it north central Italy. it is 400km further south than us. It is a very long thin country.
2) Nowhere else besides possibly France! Normally the blood vit D level is measured and if it is low, THEN a high dose supplement is given but the recommended dose is a bit lower than that but weekly for 8 weeks before checking the blood level again. It has been established that a lower dose weekly is better absorbed and tolerated than mega doses and you might not need it.
To be fair, I take 28,000 IU a week on a permanent basis - more than he is suggesting when you average it out but I wouldn't be keen on 100,000 IU in one dose, it can upset the gut a bit in some people. And I don't think it helps much with a/i issues at the post diagnosis stage.
Thank you as always sounds like saner advice. I have horrible gut issues anyway and they kept assuring me that it would not bother my gut!!! I will be getting lots of sunshine for the next several months and I will stick with that.
I am so glad that you and your region are fine!! It was difficult to pinpoint the danger on the maps on the French meteo.
Ah yes - but the question is whether your skin factory is functioning well and our age it isn't usually. At 60 you make a quarter of the vit D you made at 20 and even they can be depleted!
Hello Bluegirl 7. I'm taking a prescribed Uvedose the same as you mention. I'm also in France! I take the 100, 000 every 3 months. No ill side effects for me at all. And yes, PMRpro is right about the sunshine absorption being variable with age and anyway how much exposure does one need? Also one doctor said DON'T use a sunscreen (the better for absorption?) and another (hospital pharmacist) said DO use a sunscreen. I'm out in the sun when there is any but more for the enjoyment than worrying about getting enough Vit D. I do use milk with Vit D added which is widely available here in France.
Had a brief online check: onlinelibrary.wiley.com: Nutritional Bulletin 2014. Seems to be a north/south divide mixed picture: mandatory in Sweden since 2007, while Germany doesn't allow. Couldn't pinpoint France other than it seems to be allowed within strict regulation (I guess not too much enriching in regard to toxicity possibility). The milk I get at the supermarket is Lactel with Vit D enrichment. Anyway thanks PMRpro for raising the question. It's a really complicated issue, one not easy to regulate as there are so many factors including sunshine hours, age, diet etc. Must admit I'm a bit brainwashed into thinking if it's a French product properly regulated it must be ok.
It's historical - way back post-war sometime there was a scandal when babies were overdosed by an error in adding vit D to formula. So there was a blanket ban on adding it to foodstuffs. In the USA it is added to all sorts of things so when doctors go on about getting vit D from diet it applies for the US but mostly not Europe. It's maybe a bit silly but manufacturers do get things wrong - but then, so do governments!
I also live in France and I have been taking ampoules of vitamin D3 since 2008. Back then my first French GP (a woman) who prescribed it, told me it was the most important thing I'd ever do. I took 100,000 IU just in the winter. This progressed to the same dose every 3 months. I often wondered if I really needed it, especially during the sunny months and on some occasions, just before I was due a dose, I would get a blood test done just to convince myself. I was always on the borderline of not having enough!
In 2016, I was in Spain for the whole of the winter and saw a GP there about heart palpitations. He told me not to take the Vit D ampoule and to sit naked on the balcony for 20 minutes every morning, making sure that the sun reached the whole of my body. He said if I did this I would have enough vitamin D for me, my family and all my friends! I did this (well semi-naked) nearly every day for 4-5 months. Just before I left to return to France, in the April, I did a blood test and the Vit D was lower than it's ever been. I immediately took the ampoule of 100,000 IU. When I told this story to my GP in France, he laughed.
From then I trusted their judgement and accepted that my skin was obviously not doing it's job properly. I had my first ever DEXA scan in 2018 (at 67) and was told I had the bone density of a 25 year old. After being diagnosed with GCA in April 2020 and taking high doses of prednisone for several months, I had another DEXA scan and the results were the same.
Two years ago I asked if I could take the Vit D drops every day and the GP agreed but the drops seemed to make me itchy so I switched to an ampoule of 50,000 IU every month which is what I take now. To satisfy my curiosity once again I did blood tests and sure enough when I am due dose the result is low!
I swear by the ampoules of Vitamin D3. Hope you stay well.
I take a 4,000 IU dose every day - without it my blood level slowly creeps down to deficiency. It isn't from not being in the sun - though I don't think I expose enough judging by your Spanish friend!
I was going to make a joke saying he suggested it because he lives in the house opposite (which he doesn't as only the sea opposite) but I thought better of it 🤣.
Replying to everyone who has been helping me about the 100,000 Uvedose of Vitamin D3. Seems it is popular in France. My level in the US is usually under 30 which is the lowest you should have and the last time it was 30 in midwinter so it doesn't make a lot of sense to me regarding sunshine. My skin is a mess - incredibly thin and I have mentioned the bruising which makes me always look like I just fell down a flight of stairs. And have had osteoporosis for years. I wear lots of sunscreen, self tan and makeup and burn easily.
Anyway, It is the gut issue that spurs my hesitancy. I have a twisted colon that causes constipation etc issues and a colitis type syndrome that can lead to pain and bleeding and then is gone completely. And really bad acid reflux from a very tight esophagus and then uncoated Pred in the US. I take Nexium 20 twice a day and Famotidine 40 every evening and oodles of antacid things. Since I have been in France and walking lots more and lots of water and amazing fresh produce, stomach has been doing pretty well. Don't want to ruin that.
When folks had gut reaction to oral Vitamin D3 did it last a long time? And what kind of symptoms? Not sure how long the dose will be active in my gut etc. It is maddening for me to always have to consider my gut but all the above can cause amazingly painful times with gut cramps and severe nausea. I have a kit of meds just for those attacks. I always have to weigh cost/benefit.
I wonder what if I just drink half the ampoule and toss the rest until I see how I react? That's 50,000 IU's?? When I tried tablets of a normal type dose in the US years ago I was immediately constipated.
You would be better posting this as a new thread since you asked questions. You replied to Frenchduck and that means only she, DL and I are likely to get notifications of it just because of the way HU works with an established thread.
All I can say (I have a cast-iron stomach) is that my husband managed a few relatively high bolus doses but generally he did best with spray vit D. If anyone was going to react to anything, it was him!
I've been taking 35,000 IU a week for decades. Initially because we lived beyond the 60th parallel in Canada where we had limited sun during the winter. We left the Northwest Territories a few years ago and now spend the Canadian winters in sunny Panama. I still take the same amount because of PMR.I'm considering increasing the amount I take as there's new research coming out all the time on the multiple health benefits of vitamin D.
i take vit d every day. we are often low on it. no side effects ever. i stopped taking it for about a year (back on!!). sometimes lack of vit d can cause a weird bone marrow edema. i have it in my left upper breastbone.
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